Sunday, September 30, 2012

The past few weeks have been a time of learning for me. I'm learning to open my hands, to let go. OK, the reality is that God is having to pry my fingers open. And yes, it does hurt. Some of the tightly held hurts that I've hugged closely for years...you know, the ones that you allow to define you. Well, God is in the process of helping me release the death grip I have on some of those hurts.Who am I without those things that I've allowed to define me for far too long? I'm learning. And I'm rejoicing through the tears. I'm a child of God...and that needs to be my first identification. The real "who I am." All the rest is extra.After the last few weeks, I felt like I'd not spent the time and energy with Boo that I should have. Last night, Boo was confused. But one thing he knew and knew with complete certainty. That was that he was God's child. He might not remember all he'd like, but he knows the essentials. Boo and I discussed what is really important...for a short while. His ability to hold onto his thoughts was severely limited last night. One of the things that Boo said was that we need time to regroup, to rethink. Maybe that's what I've accomplished recently. I miss being able to talk with Boo about things anytime. Mentally, he's not able to do that on the spur of the moment. It makes those times when we can more precious. One thing I know for sure: When God pries your fingers open, He wants you to have more. It may be a painful process, but God has more in store for you. Just as He does for Boo and for me.The Sunday Community, Fresh Brewed Sunday,Spiritual Sundays,Saint and Scripture Sunday,Sabbath Moments

Wednesday, September 26, 2012

I thought I'd posted something about this earlier, but obviously didn't. I'm taking a short term online class and won't be writing any new posts until this Sunday or Monday. We are doing well. Boo has celebrated his 68th birthday and is still fiesty...at times. He's suspiciously quiet at other times. He keeps me guessing!

Monday, September 17, 2012

it's
dreary and overcast, even the birds are quiet this morning. This
gray misty day is just not much motivation for me to get up and get
moving, but I must.

I
am thinking...

about
the outward things that give me inward purpose. That sounds rather
academic, but it certainly isn't. It's really day to day stuff.
It's just the things that trigger a response from my heart, moving
them from the routine to a whole other realm. For instance, holding
and praying my rosary helps me form a daily connection with Jesus'
life, with those for whom I pray and with God who infuses that act
with Himself. Or preparing snacks and meals for Boo, a very routine
part of our day, but one which provides endless opportunities for
sharing the beauty of a special mug or flower, listening to and
reciting poetry and just talking.

I
am thankful...

for
the positive response Elizabeth seems to be making to her treatments
for leukemia. I'm even more thankful for her positive, giving
attitude. It's such an inspiration to me...and to many others.

In
the kitchen...

are
plenty of leftovers for today. Large Sunday dinners tend to provide
lots of extra food for us and lots of extra dishes. As a matter of
fact, I have a few things still soaking in the sink waiting to be
washed. (My mother would probably be horrified at that admission.)

I
am wearing...

comfortable
jeans, an off white long sleeve shirt, a black headband and bare
feet. Of course, my feet are tucked under a quilt at the moment.

I
am creating...

more
digital scrapbooks. This time I'm working on Christmas presents.
I'm also thinking about preparing family calendars for Christmas. If
I were willing to follow a prepared template, it would be simple.
But no, not me. I want to reinvent the wheel and completely design
my own.

I
am reading...

Medjugorje:
The Mission by Wayne Weible
and several novels.

I
am looking forward to...

Well,
for some reason this one is difficult this morning. I really am
looking forward to several things this week and I can't remember any
of them at the moment. Has my hot tea not kicked in yet?

I
am learning...

more
with Paint Shop every day. It's so much fun to experiment and play
with this program. It also keeps me occupied when Boo needs me
beside him. I'm also learning some Irish crochet stitches. Oh,
maybe I didn't phrase that quite right. I'm learning some crochet
patterns that mimic Irish cable knits...since I don't knit.

Around
the house...

it
is very quiet. The whole
neighborhood is quiet this morning.

I
am pondering...

my
deep need for relationship. More and more I find myself drawn to
those with whom I can be authentically myself and those who think.
Recently, I've reconnected with high school and college friends,
with cousins and even some friends from Girl Scout camp years ago.
Thank you Facebook! Many of these I've maintained a superficial
relationship with for years by exchanging Christmas and birthday
cards. Now, we actually have “conversations” on FB about our
faith, about politics (and boy, do we disagree!), about those things
that are truly essential to each of us...and about mundane, every day
things.

One
of my favorite things...

is
slowly savoring a cup of hot tea with a little stevia and sometimes a
little lemon...depending on the type of tea I'm drinking. Never,
never would I pollute a wonderful cup of tea with milk or cream, but
that's just me.

A
favorite quote for today...

“Eros
will have naked bodies. Friendship naked personalities.”

S. Lewis

A
few plans for the rest of the week...

Wow, just thinking about the
rest of the week makes me tired. We have several appointments. The
preparations for these appointments is far harder than the
appointments themselves---reminding Boo several times daily about the
upcoming appointments and what we're likely to experience there,
making sure I have all the essentials in a backpack (necessary
papers, snacks and water, change of clothes for Boo, BP cuff and
glucometer, meds just in case we're out longer than anticipated, a
knotted cord rosary and a photo of Boudreaux to help during those
confused times for Boo, my wallet, a small brush, comb, wet wipes,
etc.) and, most difficult of all, preparing him for the trip itself
(Yes, we'll be leaving the house at ___ time in a car. We'll be back
in time for ____ hopefully. Yes, you'll have your rolling
walker. No, we won't get lost. We will be coming back home.
Boudreaux will be waiting for us when we get back...)

It's been a while since I posted photos of Boo. He hasn't been cooperative. In fact, he has been adamant about not having his picture taken. ﻿Yesterday I managed to coerce Boo into spending some time outside. Once he and Boudreaux settled down on the patio, he really had a good time. I read part of Medjudgorje: The Mission by Wayne Weible. Boo enjoyed watching Boudreaux play in the grass less than six feet away from him. When a loud car drove by, Boudreaux gave up all pretext of being a big brave tiger and ran to Boo, jumped in his lap and refused to get down until I tried to take his picture. Then he jumped down and went to the door to go inside.

Boo's joy is contagious. Many, many times I've been tired or frustrated or discouraged or all three and Boo's attitude changes all that. He finds joy in the small, immediate, daily things---homemade yogurt or beingets, Boudreaux's antics, a passage in a poem or book, the warmth of a sunny day. Soon I find myself sharing his joy. What a gift! With all the disabilities Boo has, his most wonderful asset is his attitude.

Saturday, September 15, 2012

The
last month or so (I'm scared to check and see how long it's really
been), Boo has been more confused, more easily upset and
definitely needier emotionally. As much as I love him and want to
meet his needs, sometimes I need a break. You know, to take a bath,
to make dinner, to sit in silence, to just be.
Even when I can convince Boo that I need a little time, he's still
uneasy.

A
few days ago when discussing my need to take a bath again,
Boo announced that if he could just hear my voice it would help.
Ahh...maybe cloning myself...except I don't think the
world is really ready for two of me! Then, it occurred to me that a
recording of my voice might be helpful. Actually, I was ready to try
anything at that point.

We
discussed what Boo might like on a CD and he had some definite
opinions. He wanted some poems, some Scripture, a few Chicken
Soup type stories, the prayers
we're concentrating on this month, music and some jokes. Mostly, he
wanted the simple routine things that make up his day. That was
doable.

For
the next couple of days I recorded bits and pieces of our day. It
was pretty simple and not intrusive as I'd imagined. Then I chose a
few songs and excerpts of two pieces of classical music that Boo
likes. Using very basic software provided with my computer, I
prepared a CD for Boo. The volume is iffy in several places and
there are awkward pauses at times. Still, it's start.

Day
before yesterday and yesterday, I was actually able to get a few
things done on my own. Boo was not only content to listen to his CD,
he really looked forward to it. I wish we'd thought of this sooner.

Here's
what we finally included: our morning prayers that include the two
prayers we're concentrating on this month, a saint story, poems from
lunch with Boo reciting several of them, five songs that Boo likes,
four Chicken Soup type
stories, a decade of the rosary that we prayed together, two excerpts
of classical music that he likes and a conversation we had that I
didn't realize I'd recorded. I completely forgot a scripture reading
and jokes. Still, it's just a homey, familiar CD and very useful.

Why
didn't this occur to me earlier? Boo, like many with dementia,
thrives on routine, consistency and repetition. Lots of repetition.
I think with our next CD, I'll try including a couple of our friends
too. Maybe a short conversation between Boo and friends would be
comforting. Later, I'd like to include some grandchildren as well.
This type of CD might also useful at the hospital to provide a
familiar background and to drown out hospital noises.

Friday, September 14, 2012

Recently,
an acquaintance asked me what to do when she strongly disagreed with
a recommendation made by their family doctor for her disabled
husband. I've certainly been in that situation. Still each family
is different and what works for us, may not work for you.

Really,
there are no hard and fast answers that I've found. I strongly
prefer a medical practice that encourages dialogue and that is
willing to discuss the pros and cons of alternative therapies. We
can deal with more autocratic practices. It just isn't as pleasant
and straight forward.

Here
are seven things that I've found helpful when considering treatments
other than what Boo's doctor, physical or occupational therapist,
etc. recommends. (Most of the time we do follow the recommendations,
even after looking at other options. Not always, but usually. We do
always clearly communicate our decision to Boo's primary care
doctor. That way he or she is completely aware of what's happening
with Boo.)

If
this is an emergency situation, clearly state your medical wishes,
provide a medical power of attorney and let the professionals save
your loved one's life. This is
not the time to get in the way.

One

If
the medical professional suggests a therapy or medication that seems
out of line, I ask the reasoning behind his or her recommendation.
Many times this simple questioning is all it takes for us to
understand. It also helps to eliminate second guessing on my part
later on.

Once
when I questioned a doctor, with whom we were very pleased, he gave
me a rather blank look, glanced at the prescription he'd just written
for Boo and did a double take. He was in the wrong room. They were
exceptionally busy that day and the doctor mistook Boo for a
different patient.

Two

After
questioning the doctor or therapist and understanding their reasoning
if I still disagree with the treatment, I'll ask what alternatives
there are. The practices I like best will discuss them.
Ultimately this saves a lot of time and a lot of my energy. Many
times the alternatives haven't been chosen for a good reason.
Sometimes I just need to know the reasoning involved.

At
this point, if a medical professional refuses to discuss
alternatives, I ask if a different time would be better. Just for
the record, that has never been the case. Still, I like to ask.
Then, I clearly tell whomever I'm dealing with that I'm uncomfortable
with the recommendations they've made and I tell them why I'm
uncomfortable. I also tell them that I'll be examining alternatives
and that we'll contact their office later.

Three

At
home, I promptly search the internet for alternative
treatments, the effectiveness of the various treatments and the
feasibility of Boo using the different treatments. The Mayo Clinic
and Web MD are two good sources of medical information.

Four

I
call severalgood friends to ask questions. One is a
retired doctor. Two are nurses and one is an occupational therapist.
Many times insurance companies have hotlines with nurses that will
answer questions. That's not a bad resource to consider. In our
area, we have two large teaching hospitals. Both have public
hotlines staffed by nurses, residents and interns who seem
knowledgeable.

Five

At
this point, I contact the original medical professional again to
discuss what I've learned. This has met with mixed results.
Usually, they are open to some discussion. On one occasion I was
told that, “I don't discuss that type of thing with patients. They
aren't doctors. They need to follow my plan or go elsewhere.” We
went elsewhere.

Generally
this is the point where we come up with a treatment plan that works
for all of us. Rarely, that hasn't been the case.

Six

If
we haven't reached a treatment plan that both the medical
professional and Boo and I are comfortable following, I get a
second opinion. Generally Medicare and insurance companies will
pay for second opinions with little fuss. Locating another doctor
has never been a problem for us. I call the local hospitals. They
have referral services. Another alternative is to call the medical
licensing board in your state and ask for a referral.

Seven

After
I've researched different therapies, considered the feasibility of
them and talked to the doctor again...or gotten a second opinion,
it's time to decide what to do. Make a plan and adhere to it.

Boo's
health is too important to dilly dally around. No treatment plan
will be perfect. If we come up with one that generally works well,
then I'm happy.

Tuesday, September 11, 2012

Dementia
can take so much away from Boo at times---his memories, his ability
to function independently. His life has changed and changed
dramatically in the last few years. This week end Boo and I talked
about just how limited dementia really is. Several times he told me,
“Dementia may be my cross, but it isn't me.”

It
all started when I read him a poster about how limited cerebral palsy
is. He thought about it and started talking. For once, I had a pen
and the back of a grocery list to scribble notes while he talked.
Even living with Boo every day, I missed so many of the ways dementia
has not changed him. I guess I never really thought about that
aspect of it. Just the limitations.

Dementia
cannot

...kill
my enjoyment of the PRESENT.

...lessen
the power of TOUCH.

...diminish
my STRENGTH.

...overshadow
my JOY.

...crush
my LOVE.

...control
my ATTITUDE.

...take
away my LOYALTY.

...steal
my SELF.

...destroy
my FAITH.

...deny
me ETERNAL LIFE.

Boo's
list of ways dementia does not limit him may not apply to everyone
with dementia. They may not all apply to him later. Dementia is a
strange disease that affects everyone a little differently. We
don't know what the future holds. We do know Who holds our future in
His hands...and that makes all the difference.

Sunday, September 9, 2012

Digital alteration of an oil pastel of Boo, Christmas 2009 before his third stroke.

The way Jesus shows you is not easy. Rather, it is like a path winding up a mountain. Do not lose heart! The steeper the road, the faster it rises to ever wider horizons.

Blessed John Paul II

Boo really perked up when I read this quote from one of his favorite Popes tonight. "That's really how it is. It isn't easy, just like going up a mountain. I don't understand why things happen and I get confused a lot of times. But I have to keep on."

This has been a good day for Boo. Although he's prayed much of the day for Elizabeth and her family, for our family, for several friends who have continuing health problems and for one of my cousins who married today, he's been rather quiet otherwise. When I questioned him several times today, it was obvious that he was reasonably well oriented. Boo just wanted to be quiet, to stay focused on his goals.

Once again, I can learn a lot from Boo. Pray constantly. Meditate quietly. Remain focused on the truly important things. Talk less.

Saturday, September 8, 2012

Yesterday was one of those days that Boo just wouldn't eat. He absolutely refused, even oatmeal, even his new favorite---Honey Nut Cheerios. Finally after an all day struggle with his appetite, Boo was offered a strawberry milkshake. Boo will turn somersaults for strawberry milkshakes...usually. Not yesterday. Yesterday he ate one small banana and two potato chips. That's it. Nothing more.Around 2:30 or 3:00 this morning, Boo was awake in bed with a loudly growling stomach, a frustrated wife and, to top it all off, he just wasn't talking. Finally, I turned on our trusty ol' laptop and pulled up Facebook. I knew seeing photos of his Louisiana relatives and listening to me read their updates would comfort him. Boo was fairly interested...and then he saw a photo of Elizabeth.Elizabeth is a young woman in her early twenties from my Mother's local church. She's a warm, bubbly, loving bundle of energy. Boo attended that church for a few months until it just became too overwhelming for him. So, of course he's met Elizabeth. It'd be hard not to notice her in the crowd of generally less than twenty people that attend each Sunday. (This is a small town.) Last week Elizabeth was diagnosed with acute leukemia. I told Boo about it, but didn't expect much of a reaction because he really doesn't know her. As it turns out, I underestimated him. He heard me. He remembered Elizabeth. And he was affected. Boo remembers attending that church and remembers Elizabeth hugging him. I don't specifically remember that, but she probably did at the end of the service. Boo remembers Elizabeth bringing a lot of children to Mom's house to sing Christmas carols to him. (Actually, it was five or six children and they really came to sing to Mom. We just happened to be there.) The Christmas caroling was in December of 2009 and not something we've discussed in years. It amazes me that he can remember that so clearly and yet, forget the bathroom's location less than eight feet from the bedroom door.Boo asked me to read the updates on Elizabeth. I read several and he continued asking me to read them. I read one that I'd read to him before from Elizabeth's sister:

I cried today, not because of Liz's sickness, but because of her strength. For those of you who keep asking what you can do---I asked her and she said, "I'm fine. If they wanna help, tell them to sign up for a United Way Day of Caring Team and help someone in need. They can do it for me." So, for those of you who want to do something for Liz, go volunteer. Do it for Liz.

Suddenly, Boo was animated. "That's it! And I can't. She wants us to volunteer and I can't. But I can pray and fast for Elizabeth."And then I understood. All day Boo's refusal to eat wasn't due to dementia as I'd assumed, but because he was fasting. His quietness wasn't an inability to communicate as I'd assumed, but because he was praying for Elizabeth. All day he's done his part...consistently and steadily. For Boo that's quite an accomplishment and quite a witness.Today Boo has continued his fast...with modifications to ensure that his health needs are met. He's giving up desserts and sweets. That's a hard one for him because he definitely has a sweet tooth. Yet, he's given them up without complaint. Not even one tiny complaint. Not even when a friend ate homemade cookies in front of him. And we're both praying for Elizabeth...for healing and for strength. I've been humbled. So many times Boo needs help and comfort that I often forget about his very real need to help others. His ability to physically do things is extremely limited. His ability to do those things which are truly important is far from limited. I can learn from that.A Wise Woman Builds Her House,True Stories Party,Faith Filled Friday,Thankful Thursdays, Thought Provoking Thursdays, Sabbath Moments, A Wise Woman Builds Her House,Deep Roots at Home

Friday, September 7, 2012

Yep, we're still here! The last few weeks have been stressful. I let blogging go to make more time for Boo and to support others who've needed...umm...well, support. Boo's dementia has not noticeably responded to new medication. Some days and, nights for that matter, are better than others. Soon it will be time for new tests and more assessments. Until then, I'm learning to go with the flow and keep accurate records.

2.

Tomorrow is sugar free oatmeal cookie day. I bought lots of oats for Boo's almost daily three cups of oatmeal at a time craze. Now, he's interested in Honey Nut Cheerios. Go figure. We still have six pounds of oats. So, once I figure out which sugar free oatmeal cookie recipe we liked best, I'm making cookies. Lots of cookies. They freeze well and I like having homemade treats on hand for Boo. Maybe, just maybe, Boo will roll cookie balls by hand. That's my least favorite part. We'll see.

3.

Last night I went with a good friend of mine, Judy Mack, to UNC Central University so that she could participate in a forum. I learned more in that two and a half period about the history of the Wilmington 10 than I had managed to piece together in all the preceding years. Just as a side note, and to let you know just how far behind the times I am, the forum was televised to several NC colleges live and all participated in the question and answer period. I felt like I'd been transported into the future. Really, it was one of the best uses of technology that I've seen. After the forum, Judy and I talked to several people who recounted stories of her late mother's activism. This was definitely one of the highlights of my week. Here's a link to a news article on the event by a reporter for The Herald Sun.

4.

I've learned some new to me skills with my Paint Shop program while I took a blogging break. Now I can make and use photo masks, do more extensive touch ups on old photos and manipulate text the way I want. OK, I know most of you can already do all that and it was easy once I understood what to do. Next, I'm working on creating my own digital scrap booking paper and elements. This is the most fun I've had since art classes years ago.

5.

Last Sunday two of our children came to visit for the day. It was great to see them and to hear about their studies and money making schemes. They're both creative, if nothing else. Both are also developing an interest in politics...at least on an informational level. Yea! They don't have to agree with my views. I just want them to know what is happening around them and make up their own minds...and to act on their beliefs.

6.

A young friend of ours in her early twenties was diagnosed with an acute leukemia this past week. Her father also died of acute leukemia when she was in elementary school. I was devastated. Liz is a vibrant, energetic Christian who planned to graduate from college and get married this December. Both plans are on hold right now while she concentrates on chemo and healing. When her friends asked what she needed and how they could help, Liz responded in typical Liz fashion, "I'm fine. If they wanna help, tell them to sign up for a United Way Day of Caring team and help someone in need. They can do it for me." That's Liz's spirit, always sharing and upbeat.

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About Me

We are Catholic Christians on a journey into the unknown world of life after stroke,
of learning to handle changing physical and mental abilities,
of finding creative ways to foster independence
and, most of all, loving God, each other and our family.